Home. Finally. After what seems like the longest week of my life! We’re finally home. I’m so happy and relieved to be here. I’ve been dreaming of this day all week. Coming home meant my baby would be okay and out of harm’s way. It meant we wouldn’t have to worry about his breathing stopping in the middle of the night and having to be intubated. It meant our son would be unplugged from the monitor, his IV taken out & the nasal cannula removed. It meant getting to sleep in our bed again & not on a pull-out couch for one person and my husband sleeping in a chair. It meant getting to take long showers and eat home cooked meals. It meant not having nurses, doctors & respiratory therapists coming in & out of our room at all hours. It meant my baby would be okay. He is going to make it!
Our son seems to be sick and/or sniffley ever since we put him in daycare. A constant struggle all parents with kids in daycare have to deal with. On July 4th his congestion was noticeably worse than usual. He had a low fever that morning which went away with Ibuprofen and no other symptoms other than mild coughing and congestion. By early afternoon he kept whining & just wanted to be held. He also wouldn’t eat or drink so we quickly decided to take him to the Doctor. At the doctor’s office, he received two nebulizer treatments. Even though the treatments seemed to help, the doctors still advised we go to the E.R. to be on the safe side. The Doctor’s office also gave us a nebulizer machine for use at home once we left the hospital. We went straight to the hospital as instructed thinking it would just be a precautionary visit & we would be home by nightfall just in time for fireworks. We’d been talking about fireworks for days now to our almost-2-year-old. He was so excited for the light show. Hopefully, we wouldn’t miss it. At the hospital, we thought they would monitor his breathing, check his vitals & maybe give him fluids and that was all. Little did we know, the situation was a lot worse than we had anticipated. Trying not to alarm us, the doctors asked many questions about our sons & our medical history. No, he’d never had problems breathing before. No, there’s no family history of asthma. Yes, he gets sick a lot from daycare but that’s the norm. Everyone seemed to be bewildered by his condition. Why was this happening to him & why did it happen so fast? I would have bet money the night before that he would’ve been fine the next day. He was even acting normal that morning. We just hoped & prayed the doctors would figure out what it was and fix it. Fix our baby so we could go home.
Everyone was so kind and patient with our son (& with us). They gave him toys to keep him busy & even movies to watch. We were soon informed that our munchkin was going to be admitted. I thought they just wanted to keep an eye on him for the night. No biggie right? I think I was just trying to calm the inner voices in my head with these lies. Everything wasn’t ok. Deep down I knew that. My husband and I both did.
Our son was admitted to PICU (Pediatric Intensive Care Unit) for three days and diagnosed with Bronchiolitis. Our friends & family kept asking why he was in PICU just for Bronchiolitis. It seemed a little extreme to them. The doctors were worried about respiratory failure and then having to intubate our son. Basically, his body was struggling so hard to breathe that there was a chance it could just stop out of pure exhaustion. On the PICU floor, they generally have the highest level of medical care, a higher nurse-to-patient ratio, and they also monitor heart rate, breathing & blood pressure more closely than other areas of the hospital. Our son received steroids to open up his airways, antibiotics to fight the virus, IV fluids to keep him hydrated & full oxygen via nasal cannula.
My husband & I seem to handle stressful situations the same way. We do what needs to be done, follow instructions, inform those whom we need to inform & follow-up with any updates. We don’t react emotionally until it’s all over. We can’t. If we did, we’d fall apart. We couldn’t do that to our son. We pasted smiles on our face, woke up with him at night & held his hand every time a nurse came in the room. We stroked his hair, wiped his tears & told him we loved him 1,000 times each day. My husband was nice enough to let me sleep on the single pull-out couch & he slept in the chair in the hospital room. A discomfort we both gladly took on to be with our son every step of the way.
Our sweet boy wasn’t able to eat or drink for 2 days. By day 3 he was on a clear liquid diet of which he only wanted apple juice. We were moved to the pediatric unit at the end of day three. Progress. On day 4 he was allowed to eat solids again & we were told we could remove the nasal cannula as he was weaned off the oxygen & successfully breathing on his own. Being allowed to eat solids again also meant he was allowed to have chocolate milk! Halleluiah! This boy almost drank all the chocolate milk in the hospital. At least we found something that made him happy. Whenever someone would walk in the room he would say “No! No! No!” & then a few minutes later he would say “Thank you! Bye-bye!”. It was the most polite, toddler way of saying you’re not welcome here & I would like you to leave now. At least it gave some of the nurses a chuckle or two.
Up until this point our son had basically stopped being his normal talkative self. At almost 2 years old, he typically is full of energy & very friendly to everyone who will talk to him. Such was not the case since we were admitted. He stopped talking and instead would point & grunt when he needed to communicate. He didn’t smile and would cry when anyone came in the room that wasn’t his mommy or daddy. He wanted to be held constantly which was difficult with all of his new medical attachments. He was simply miserable. But on day 4 we removed the nasal cannula and it was the most amazing thing ever! Within minutes our baby was laughing and dancing in our arms. We were almost there! You could see the weight lift off my husband & my shoulders. We had our baby back! Well, almost.
The respiratory doctor wanted to keep us another day with more breathing treatments just to be on the safe side. Of course, we were in total agreement. We saw the huge improvement in our baby and knew the doctors & nurses were making all the right calls. They had his best interest in mind and didn’t want to release us just to come back a few days later. The hospital had this really cool atrium area in the middle of the building with dinosaur statues. We were told we could walk our son around as long as he wore a mask to protect him from germs. They also advised that blowing bubbles would be great therapy for his lungs. Surprisingly our son had no problem wearing the mask. I think he was just excited to get out of the hospital room for a little bit. So off we went walking hand in hand with this cute little toddler wearing a mask with a disconnected IV sticking out of his arm. As we passed people in the hallways they initially looked at us with sad eyes until they heard our son belt out “Hi! Hello! Hi!”. He greeted everyone he saw. He said “Hi!” or “Hello!” and then as we walked passed them shouted “Bye-bye!” to literally every person that walked by. Quite often the people would turn around and respond just as loudly. I wanted to cry! It was beautiful. To hear his sweet voice full of life and energy again.
The afternoon of day 5 we were finally told that we could go home. We were overjoyed! Of course, our little one would continue his meds orally for a week and have 2 nebulizer treatments per day for the next month or unless otherwise instructed by his doctor. No problem! We’ll do whatever it takes. We packed our things and waited for the final discharge papers. Walking out of the hospital was surreal. I felt like we were walking in slow motion as though we were in a movie. Walking by the rooms of all the other sick kids and yet we were the lucky ones going home. I can’t imagine ever having to do this again. I feel sorry for those kids and families who will be in the hospital even longer and especially for those that don’t make it out. It absolutely breaks my heart.
I am so grateful it’s us walking out these doors. I feel selfish and undeserving but it’s true. I’m glad it’s me. I’m glad I get to rock my baby to sleep tonight in his room. I’m grateful I have a loving husband who’s the best dad in the world to this little boy. I couldn’t imagine going through this without him. I’m grateful for the doctors, nurses & specialists. I appreciate their kindness & patience with us when asking lots of questions and also with my son who wasn’t their biggest fan. They still smiled and treated him with such a gentleness when caring for him. I’m grateful to every single person who helped us during our stay. They made this absolute nightmare less awful. Every person who came into our room, from admitting, housekeeping, nutrition, doctors, specialists & nurses, asked us if we needed anything. Every single time a hospital employee or volunteer saw us, they asked if they could help. Every. Single. Time. Nurses even brought us coffee…repeatedly. Feeling so vulnerable & broken in the state we were in, this was the biggest comfort to us. Not only were they taking care of the most precious person in our lives but they also took care of us. I will never forget how kind we were treated at St. Mary’s Medical Center. I’m grateful for all of our family and friends and the support they gave us during this time. So many people offered to help and/or bring us food. I’m grateful to my son’s grandmothers who came to visit & bring comfort. I’m grateful to the friends who reached out by text for updates because they care. I’m grateful for the gifts, cards, food, thoughts, prayers, friendship, family, and love. I’m overwhelmed by all of it. Things could have turned out so differently. People have said “you poor things” or “how are you holding up?” expressing their concern for our well-being. This has made me realize how good we actually are. I never want to be in a hospital again for any reason other than giving birth but we were here and we made it through. We had all the love, support & help we could ask for and were treated with such warmth & kindness. We were only in the hospital for one week. It could have been so much worse and had such a different outcome. We are very aware of that. We are okay now. We are home. We made it. So please save the sympathy for those who are still struggling. We’re good. Just welcome us home. We are the lucky ones & we are grateful!
The 4th of July has found a new meaning in our home. We will now think of the day we almost lost everything. The day our world stopped. The holiday fireworks will now be a reminder to celebrate, not just our freedom but our family as well!
~ Cassie
With our sincerest gratitude to the following:
- St. Mary’s Medical Center & the Palm Beach Children’s Hospital for the quality care we received.
- Lily with Child Life Council for the fun books & toys she brought to distract & entertain our son.
- The Pulmonologist from Kidz Pulmonary Center for being so kind and thorough.
- Ryan’s Case for Smiles for the adorable dinosaur pillowcase. Our son loves dinos & it made him smile.
- Pediatric Associates for their wonderful Doctors and staff who dedicate themselves to making kids healthier & happier.
